Ehlers-Danlos Syndrome -stretch marks on DS's back?

[klmama]

This site has some helpful info for those with connective tissue disorder issues.  The writer isn't a doctor, but rather a mom/patient who wants to share what she's learned.  The site isn't always intuitive, but there's some useful info there.  

Edited December 29, 2020 by klmama

[mom2scouts]

We have a famiy friend with ED and there's a strong possibility that my dd, one ds, and I have the hypermobility type. We are extremely flexible and I still score 9 out of 9 on the Beighton scale.

[IfIOnly]

DS has a tilt table test from a neurologist referral for POTS. His doctor says that's the first step for him, and POTS can be a comorbidty of EDS. He does have dizziness when standing and headaches that are a problem, so we'll see. I don't think it's so much depending on results, but from there, she mentioned having him looked at by a geneticist, I think.

He also has a referral for PT for his back pain. His x-ray showed upper back curvature. Nothing too bad, it is slight, but it could be causing pain. Also just loose ligaments and joints could too if he has EDS or issues there. It is someone with EDS/POTS knowledge, so they will be careful as we're looking into those and if tests confirm.

She has him on 5htp plus ashwagandha for depression, which is doing wonders for his mood!

His vitamin D level was 20, so low. Will start supplementing ASAP.

Headaches, dizziness, back pain, mood, and overall just not feeling great/100% are his main concerns. He's definitely getting the help he needs with those from his doctor. Thankful!

Edited January 13, 2021 by IfIOnly

[PeterPan]

3 hours ago, IfIOnly said:

His vitamin D level was 20, so low. Will start supplementing ASAP.

Good! You might look into taking K2 with it to help the D absorb. We use an oil based D.

We love the Natrol time release 5HTP here. Amazing stuff.

[IfIOnly]

40 minutes ago, PeterPan said:

Good! You might look into taking K2 with it to help the D absorb. We use an oil based D.

We love the Natrol time release 5HTP here. Amazing stuff.

Yes, thank you! K2 and mag I'm hearing are important cofactors. I'm going to search here for dosing recommendations and other info. Doctor says just 2000 IU a day, bit that seems too low of a dose from what I remember.

Hm, I never thought about time release for 5-htp. That makes sense. Will check Natrol out. Thank you!

Edited January 13, 2021 by IfIOnly

[PeterPan]

53 minutes ago, IfIOnly said:

Yes, thank you! K2 and mag I'm hearing are important cofactors. I'm going to search here for dosing recommendations and other info. Doctor says just 2000 IU a day, bit that seems too low of a dose from what I remember.

Hm, I never thought about time release for 5-htp. That makes sense. Will check Natrol out. Thank you!

So this is just me, but I adjust the vitamin D up until it affects my sleep (keeping me awake) and then I back it down slightly. We've done bloodwork, and usually when I do that my labs are good, at the upper end of the normal range. When fall came in, I started getting tired really really early. I let it go because I knew I was within a short bit of my annual bloodwork. My D levels had dropped 30 points!! So I then went to my winter dose and feel much better.  

Remember the line in the Beverly Cleary book where the kid is turning into broccoli? That's me. Need my D so I can grow properly. 

So I guess see what happens. I take 10k IU a day during the summer and 15k IU during the winter. If I don't, I'm groggy, falling asleep hours early, and it's just really obvious. But I've run genetics and I have a VDR (vitamin D receptor gene) defect. And I have bloodwork confirming that amount makes my numbers good.

When I started taking D, I didn't have the K2 up quite high enough and I had some funny things happen with dizziness that was due to calcium and the crystals in your ears. I can't swear what did it, but now I take a good stiff dose on the K2 and haven't had a recurrence. I take 4 capsules of the K2 daily. Your gut is supposed to make it, so I can't say everyone needs that. I'm just saying for me that seems to be a good amount. 

https://www.amazon.com/gp/product/B0013EJ5QM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1  this is the specific K2 I take. There are a couple forms, including a swankier MK-7 that isn't really what you need. And I think (not medical advice here, just me and what I do) I'd think of it proportionally. So if you're taking a D capsule that is 2k or 5k IU, maybe take *1 or 2* of these. And if you take it, up, take the K2 up, kwim? Or keep the K2 low, pick an amount of D you think is right based on symptoms, and rerun labs. 

I can tell you my dd, being 21 and all, decided she wasn't gonna do it like her mama, haha. Well she reran her labs and they were still junk low. But that was a different brand and not enough K2. I was like kid, listen to your mom.  So I don't know how many brands work but I know some you'll find on amazon don't. You're always good to run bloodwork to confirm what you're doing is working. And I personally would not hold back, not with numbers that low. Getting the D up may help some of that depression, mercy. It's like sunshine in a bottle!

You might even throw inhibition to the wind, cranking up the 2k you've got. And crank up the K2. I don't think the magnesium matters. I take it, but I don't think that's going to be what will hold it back. Don't overcomplicate it, kwim? 

Does he drink cow or alternative milks? Many of them have D added. 2k is such a pitifully low amount. I sunbathe pretty regularly in the summer, and I still need 10k a day. Just my genes. So don't hold back.

Also, you understand this means he needs to take up cruising, right? Gotta have that midwinter pilgrimage for sun. 

PS. We had a thread on D a while back with more viewpoints.

Edited January 13, 2021 by PeterPan

[IfIOnly]

26 minutes ago, PeterPan said:

So this is just me, but I adjust the vitamin D up until it affects my sleep (keeping me awake) and then I back it down slightly. We've done bloodwork, and usually when I do that my labs are good, at the upper end of the normal range. When fall came in, I started getting tired really really early. I let it go because I knew I was within a short bit of my annual bloodwork. My D levels had dropped 30 points!! So I then went to my winter dose and feel much better.  

Remember the line in the Beverly Cleary book where the kid is turning into broccoli? That's me. Need my D so I can grow properly. 

So I guess see what happens. I take 10k IU a day during the summer and 15k IU during the winter. If I don't, I'm groggy, falling asleep hours early, and it's just really obvious. But I've run genetics and I have a VDR (vitamin D receptor gene) defect. And I have bloodwork confirming that amount makes my numbers good.

When I started taking D, I didn't have the K2 up quite high enough and I had some funny things happen with dizziness that was due to calcium and the crystals in your ears. I can't swear what did it, but now I take a good stiff dose on the K2 and haven't had a recurrence. I take 4 capsules of the K2 daily. Your gut is supposed to make it, so I can't say everyone needs that. I'm just saying for me that seems to be a good amount. 

https://www.amazon.com/gp/product/B0013EJ5QM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1  this is the specific K2 I take. There are a couple forms, including a swankier MK-7 that isn't really what you need. And I think (not medical advice here, just me and what I do) I'd think of it proportionally. So if you're taking a D capsule that is 2k or 5k IU, maybe take *1 or 2* of these. And if you take it, up, take the K2 up, kwim? Or keep the K2 low, pick an amount of D you think is right based on symptoms, and rerun labs. 

I can tell you my dd, being 21 and all, decided she wasn't gonna do it like her mama, haha. Well she reran her labs and they were still junk low. But that was a different brand and not enough K2. I was like kid, listen to your mom.  So I don't know how many brands work but I know some you'll find on amazon don't. You're always good to run bloodwork to confirm what you're doing is working. And I personally would not hold back, not with numbers that low. Getting the D up may help some of that depression, mercy. It's like sunshine in a bottle!

You might even throw inhibition to the wind, cranking up the 2k you've got. And crank up the K2. I don't think the magnesium matters. I take it, but I don't think that's going to be what will hold it back. Don't overcomplicate it, kwim? 

Does he drink cow or alternative milks? Many of them have D added. 2k is such a pitifully low amount. I sunbathe pretty regularly in the summer, and I still need 10k a day. Just my genes. So don't hold back.

Also, you understand this means he needs to take up cruising, right? Gotta have that midwinter pilgrimage for sun. 

PS. We had a thread on D a while back with more viewpoints.

Lol. Yes, dear, mama knows!

This is fabulous info. Will find that thread. That's so interesting about your genetic issue and how much you need to take and how quickly your levels fall. That's great you were able to discover that. Appreciate the K2 recommedation

Thank you so much.